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My name is Neil Sugden I have a rare condition called Cystinosis i am doing this half marathon to help fund research into improvements in medication and ultimately a cure for Cystinosis. All monies raised will go to the Cystinosis Foundation UK of which I am a trustee.
I was asked by my friend and fellow trustee to run the Mizuno Half Marathon in Amsterdam with him which is on the 17th of October i have only ever ran for a Train so this will be a great challenge for me especially as i only have 3 months to train for it.
What is Cystinosis? Cystinosis is a rare disease that primarily affects children. It is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain and white blood cells. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine.
Cystinosis Symptoms: Cystinosis also causes complications in other organs of the body. The complications include muscle wasting, difficulty swallowing, diabetes, and hypothyroidism. It is estimated that at least 2,000 individuals worldwide have Cystinosis, though exact numbers are difficult to obtain because the disease is often undiagnosed and/ or misdiagnosed.
Medication: People with Cystinosis have to take a massive amount of medication around the clock. I am lucky i only have to take the eye-drops every 2 hours minimum during the day to dissolve crystals in my eyes.
With around just 150 patients in the UK most of the fund raising is done by family and friends of patients as the charity can't afford specialist marketing to raise awareness, as employed by larger charities, and it is therefore increasingly difficult to raise the amounts needed to help our children. Anything anyone can do to help would be so appreciated.
For more details visit http://www.cystinosis.org.uk
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